Go confidently in the direction of your dreams. Live the life you have imagined.

Henry David Thoreau

Day +11 – Hair today, gone to…….

Friday July 27, 2012Quail Run Lot 15Moffitt Cancer Center Room 3715

I run by Karen and Al again this morning, actually twice over in their newer section of the park. Then toward the end of my run as I am going up and down the streets of the older section where Winnona is parked, Karen and Al are talking to Jo Beth and Catherine who have dropped by to check out the park and to leave me another batch of their famous cookies. Thank you Jo Beth & Catherine! I am SO set for cookies, ice cream and candy. Sounds like a questionable diet though doesn’t it?? :-))

I had left my phone in David’s room last night and he had emailed me to tell me he had it. So I had a hint that he might be feeling better today.Here’s what I find when I arrive this morning.

When I arrive he is trying to return yesterday’s call from his brother Roger. I am very happy to see him improved from yesterday. Although as the day goes on it is clear that while he is feeling better than yesterday, he is feeling about like he had on Wednesday which is to say “tentative” and “tired”.

He tells me he got up because he hadn’t been able to sleep since 5AMand his back was getting tired of being in bed. The sleep problem is not solved. He reports that he was feeling pretty good so he checked his email and shaved. He took a big drink of water because he was going to go out for a walk and threw up the water. This is now becoming another continual side effect. He called his nurse Mina who brought him anti nausea medicine. He tried the walk now but only walked a little over one lap when his breakfast came. So he came back to the room and was able to eat his breakfast, Mina hooks up today’s potassium drip and after breakfast he takes a nap to discourage his stomach from further revolt.

When I first see him, he seems much better than yesterday but becomes increasingly “tentative” and “tired” as the morning is filled with everyone coming in one after another to “take care of things”. He is being discharged tomorrow and since it is a Saturday, most of the people on his “team” will not be working.

First his nurse, Mina, comes in to take him off of the potassium drip.

Then Rounds crew shows up. They of course tell him he’s feeling well and they’ll see him tomorrow before he leaves. PA Mark Honor is back, we’re glad to see him.

Then Sarah comes in to change his bed sheets.

Then Patsy comes in to clean

Then the snack man arrives with a handful of things and David actually wants a bag of peanut M&M. THIS is a VERY good sign.

THEN the beautician comes in to cut his hair down close. His hair has been falling out for the past two days and he decides to just have it close cropped and his moustache trimmed very close as well to make for less hair everywhere. Mark Honor writes an order for it and in no time……

Here’s his new look.

Then the dietician comes in to go over what he can and cannot eat. Mostly there are no restrictions other than buffets or salad bars including places like Subway.

I think it’s ironic that after the dietician leaves he decides to eat the peanut M&Ms. HA!

Then the “Transition Nurse” comes in to go over the ENORMOUS list of what you can and cannot do after discharge and all the circumstances under which you must call the BMT people and those in which you must call 911. The list is literally pages long. She gives us a bag with a plastic tub in case he vomits, a box of masks to wear outside, a box of gloves to wear, a thermometer, a toothbrush, foaming hand sanitizer, two scissor clamps and saline mouth flush. All of this is of course because he has no immune system now.

Then the pharmacist comes to give him his list of medications and go over them again. There are those he is to take regularly, those he will take as needed and those to be put “on hold”. The latter includes all vitamins and minerals he was taking. He has to bring this list with him to every follow up appointment at the clinic. These appointments start on Sunday and will continue daily until his doctor decides otherwise. So basically he gets to sleep somewhere else starting tomorrow night but he’ll be in the BMT clinic for a part of every day.

Then just as she leaves, they bring his lunch. He really has lost his appetite and just picked at his food today although he did manage to eat an entire slice of cherry cheesecake. But he joked “who would ever have thought I’d have to push myself to eat cheesecake”.

I wish I could do a slide show of “David and his cheesecake” but I’ve spent too much time this afternoon with Picasa 3 and Live Writer with no success so here are just the stills. If you know an EASY way to do a slideshow in picasa and get it into Live Writer please send the Dummies Guide.

The looks on his face make me laugh.

Then as he had JUST finished his lunch, or rather MOST of his cheesecake, the Physical Therapist comes and wants to take him for a walk and go over all the PT exercises he’s to do daily when he’s discharged.

Check out this photo. I guess you’d be happy too if you had such a great lookin’ babe walking you down the hall. I had declined to go along so he could have a great time. :-)) Notice he has on his winter weather walking clothes including his ski hat.

I think he may have over done the number of laps. He’s definitely tired and naps right away when he returns. I put the sign out on the door and turn out the lights.

Then the Lodging Coordinator opens the door and I do need to talk with her about the discounted rate for us to stay at The Marriott Residence Inn near Moffitt. So we go outside and talk in the hall. This is a really wonderful arrangement that Moffitt has with Marriott and I have heard nothing but good things about The Residence Inn.

Then I come back in the room and in 10 minutes the nurse Mina opens the door, in spite of the sign saying please look in the window, and says “Oh I won’t disturb him”. Does she really think she can open that big heavy door, talk without whispering and not wake a sleeping person? Well maybe someone who sleeps a lot more soundly than David.

Then the door opens again and it is Kay Quinn, our Case Worker, who needs to talk to me about the cost of some of his discharge meds and get a Medicare form signed. I really like Kay. She has been so helpful in all of this with the oh so important money piece. She reiterates how sensitive The Residence Inn is to needs of Moffitt’s patients and tells me that some of their staff have even come to the BMT caregiver classes so they will be even more informed.

After it taking 90 minutes to get home on I 75 a few days ago I am very happy that we will be for a while at a lodging much closer to Moffitt. It would be terrible if there were a lane closure for construction on the Interstate, as is happening during the evenings now, and I needed to get him to the hospital for some reason. The Moffitt discharge rules are that you must be within 30 minutes until you are released to your “home home” as they call it which they still refer to as Virginia for us. They don’t get full timing any better than most folks. Under good traffic conditions, Quail Run is within 30 minutes but with the uncertainty of the construction on I-75, I feel better being closer.

I know they all really do have things they need to do and they can’t always come back but this is almost funny. He’s been trying to sleep since 1:00, it is now nearly 3:30. His day is getting away from him.

Then his nurse comes in. He has awakened and is sitting up just in time for the neupogen shot. She gives him the shot in his belly and listens to his lungs. They are on the alert for respiratory problems.

He hunts all over on the TV channels to see when the Olympics are going to be broadcast. I had heard the opening ceremony was to be at 4:00 but he can’t find that it is being shown in real time. He finally discovers that coverage here starts at 7:30. I’m surprised actually that he is interested in watching the Olympics. I don’t recall that we ever have or perhaps it’s just that I never have. This is a sign he’s feeling better. Yesterday all he wanted to do was sleep.

He successfully does 6 breathing exercises on the spirometer getting up as high as 2250. When he finishes Roger calls him back and they have a nice conversation. That too is a good sign since the spirometer usually is about the most exhausting thing he does.

The door opens and in comes his dinner. He says he just finished his lunch.At one point he remarks that he seems to spend the whole day eating. What a treat he would have found this just a short time ago. And such a shame that he can’t enjoy it as this would be a dream come true for a guy who loves to eat.

I have a lot of things to do this evening, including getting groceries to take to the Marriott and doing his laundry so I cannot stay long. But I do take a 3 lap walk around the “neighborhood” with him. He is resting when I leave.

Tomorrow is discharge day. It looks like he may be up to it. Life is going to totally change again. On the way home I realize that I have forgotten to go to the Moffitt Pharmacy to pick up those medications. Oh dear, I sure hope they are open on Saturdays or I’m in a real pickle!

He can pull off the new look!! I am glad today was better and he is interacting better and also that you feel he may, in fact, be ready for discharge. This will definitely be a change - I am glad to hear that Residence Inn takes their role as a 2nd stop for transplant patients seriously. I am also glad he will likely be able to sleep much more without people coming in constantly. It is a surprise that he has so little appetite, but clearly, his body is busy doing other things. The pictures really showed his hestitation to make it through the meal. I look forward to the post-discharge updates as his cell counts continue to rise and hopefully, he becomes less 'tentative' and less 'tired'!!!! Keep up the fight - hopefully, each day is better than the last :)

What a difference a day makes. I mean I hoped that David would suffer no side effects at all, but I knew that was unrealistic. I'm not going through it with him, as you are, Sherry, but I think they are right. He is doing very well.

I like his new "do". He's a handsome man. I'm glad you'll be with him at the Residence Inn. Of all people I know in RL, I think I'd want you because you are so methodical and logical, and caring.

Wishing you and David days of progress to full strength. I imagine just to get out in the fresh air will lift his spirits.

I have stayed in regular Residence Inns, and they are very nice. I look forward to hearing all about it, tomorrow. Hope you and David sleep well.

Hey, David, the new haircut rocks! You definitely look less like a brother of Einstein and very distinguished. Hmm...is that a good thing? Looks great! Keep up the good work and I wish you a peaceful and easy transition to The Marriott. :)

Great haircut! Hopefully David will enjoy the "no maintenance" aspect of it as Mike does. Couldn't help but giggle at the pics of him eating his cheesecake. That would be rather filling for someone without an appetite. Nice BIG smile as he walks with his PT -- LOVE that!! Will be thinking of you guys tomorrow as you move onto the next phase.

So good to things are back on an upswing. It will be wonderful to get out of the hospital and into a place that you can call the shots! (Geez I bet the list of instructions will fill quite a book. But still there won't be all the interruptions of the little sleep that he does get. Be sure to pack all your goodies. The thing I like least of all about staying in a hotel is missing all my goodies. Sleep well the move will be draining.

Great new dooo!!!!I wonder if it will take him a day or two to get use to not having all the foot traffic coming in and out of his room at the Residence. Looking forward to the next chapter in your life.Betty

I like the new hair. Remember our cookies are "good for you" a good quick breakfast or snack. I am so glad he is doing better. Good luck today with the move and let us know if you need anything while at the Marriott.

Catherine here- The thing that helped me the most with nausea was Fritoes corn chips. I know it sounds crazy, but someone else getting treatment recommended them and they really worked for me.I know they are junk food but something about all that salt and fat seems to calm the stomach.

I was so glad to hear David was feeling better. Now if he could get over the nausea and get some sleep. I'll bet he'll be able to sleep much better at the Marriott. At least we know that there, his "nurse" will be much more considerate.

With all that weight off his head, David ought to be trekkin through the halls - seriously, he actually looks like were related now! Great to hear him so chipper yesterday afternoon. Looks and sounds like he's rounded the corner. Living at the Marriott will be a nice transition back to normalcy and a reprieve from the constant 60 minute disturbances one experiences at the hospital. That alone should speed up his recovery.

I love the new hair...its good considering he is not sleeping well at night that he is able to nap throughout the day...so so happy to her he had a better day....I think your on the upswing :)....good luck getting discharged-and we pray you continue on your way 'UP' !!!!

It's a great summer doo!! Glad he's feeling a bit better. No matter what will be good to get out of the hospital and not long until he can go back to the Winonna!!! Yea David, keep improving.-- Love you both Cindy

So glad to read Uncle Dave is doing better today. Super cute pic of him with the PT (who agrees with me that he is the local Moffit Rock Star). I like the new look. He definitely looks like dad now! Hope he is able to rest better at the hotel - sleep is important!

Happy Freedom Day, Dear Boyds.The Duke would like to express his joy on your special day of deliverance!

Unfortunately, Mr. Boyd's conservative, ultra-classy coiffure so unsettled the Duke he was unable to write. If one were to add a pair of highly polished Italian loafers and a Giorgio Armani suit to Mr. Boyd's wardrobe, he could easily be mistaken for the twin of a bond-trading financier!

His Grace had the distinct displeasure of meeting this dubious character aboard a yacht while having cocktails with Ben Bernanke, Mario Draghi and the oh-so-delicious Christine Lagarde. (he was tempted to lick her knees) The Duke was swindled by this evil person, and rest assured, the Duke is not easily duped!In fact, his Grace is SO unsettled he is currently out on the back 40 digging up and re-burying all of his assets, including bones, Bully-Stix and squeaky toys. Personally, I think Mr.Boyd looks very classy.Continued forward progress,The Dowager Lady M.Assistant Master of the Household,for His Grace, The Duke of Huntingtonshire

The new "do" looks great on David, but then I'm partial. Jim uses clippers on the shortest setting so he doesn't have to pay for haircuts, and I just shave his neck and be sure he didn't miss any spots. It's a distinguished looking style!Hope all goes well with the discharge today.